A few days ago, in order to further improve the comprehensive diagnosis and treatment capabilities of rare diseases in Guangdong Province, and gradually realize the goals of early diagnosis, early treatment and standardized management of rare diseases, the Guangdong Provincial Rare Disease Diagnosis and Treatment Network (Lysosomal storage diseases, referred to as Lysosomal storage diseases) LSDs) Diagnosis and Treatment Collaborative Group was established in Guangzhou, and 20 core hospitals became the first batch of members of the collaborative group, aiming to use lysosomal storage diseases, a group of diagnosable and treatable rare diseases as the entry point, to explore and improve the rare diseases in Guangdong. Modes of approach to disease diagnosis and treatment capabilities. This is also the third lysosomal storage disease diagnosis and treatment cooperation group established in China after Jiangsu and Tianjin provinces/cities.
While improving the comprehensive diagnosis and treatment level of rare diseases, the medical insurance of rare disease patients also needs to be paid attention to. When more and more rare disease patients can use and afford medicines, clinicians will have more confidence to continuously strengthen the capacity building of screening, diagnosis, treatment and management of rare disease patients.
In addition to promoting the construction of comprehensive diagnosis and treatment capabilities for rare diseases in the province, relevant departments in Guangdong Province are also exploring innovative ways to alleviate the difficulty of drug use for patients with rare diseases. Based on their own actual conditions, all regions of Guangdong Province are actively exploring the rare disease protection model with regional characteristics, such as government-guided, market-led, inclusive commercial health insurance that is effectively connected to the city’s social medical insurance: Guangzhou’s Suisuikang, Ping’an Buddha in Foshan, etc., have guaranteed the medication for patients with rare diseases.
It is understood that rare disease diagnosis and treatment and payment are symbiotic and integrated. Explore the establishment of a drug protection mechanism for rare diseases, integrate medical security, policy-based commercial health insurance, social assistance, charity assistance and other resources to realize a multi-level comprehensive security model for drugs for rare diseases, which will also help solve the problem of rare disease diagnosis and treatment, and further Improve the sustainable development ecosystem of rare diseases and help China’s rare disease prevention and control.
Xie Lijuan, General Manager of Sanofi Global Business Unit China, said: “The STEP project in Guangdong is inseparable from the support of governments at all levels, China Rare Disease Alliance, collaborative hospitals and clinical expert teams. Sanofi is a global leader and pioneer in the field of rare disease treatment. For more than 20 years, we have accelerated the introduction of innovative and high-quality drugs, and actively cooperated with the government, academies and various partners to jointly improve the diagnosis and treatment of rare diseases in China. Explore diversified security models.”
Text/Guangzhou Daily Xinhuacheng reporters: Wu Wei, Zhang Dan
Photo/Guangzhou Daily Xinhuacheng reporters: Zhang Dan, Wuwei
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Video/Guangzhou Daily New Flower City Reporter: Zhang Dan, Wu Wei
Guangzhou Daily New Flower City Editor: Cai Lingyue